I have been in a funk today but am feeling much better now. I think it's mostly that Jonah is gushing almost daily (although not today, Praise God!) again. I get so discouraged when I think he is over all that or we've found the solution, and then he starts again. It's so frustrating.
But what really gets me is that with each gush, I picture his esophagus blistering. I told you (or maybe I tweeted it) that we've been having to fight a little more to get him to eat this week. Today I think I know why. When he spits up, it's tinged a dark pink/brown. He hasn't eaten any solids today, so I know it's blood. Something's going on down there. I'm praying and hoping that it's just some isolated blistering and that it has drained now for good. But I worry. It's so hard to trust God sometimes. I'm always waiting for the bottom to drop out. I think I feel guilty that Jonah is doing so well. Leah's gone. Tripp is struggling so much. It doesn't make any sense.
As far as what we have been/are going through I'm less of the mentality, "Why Gabe? Why Jonah? Why us?" and more of the mentality, "Why not Jonah? Why not us?" This has nothing to do with how strong I am or my positive (ha!) perspective or anything. (You guys seriously have me all wrong, by the way.) I guess I just feel like I am owed nothing. I kind of think of those words, "I'm just a poor, wayfaring stranger," just trying to survive until I get to go home. And although I LOVE my life with Matt and Jonah, honestly there are many nights I go to bed ready to go home (wishing Matt and Jonah could just go ahead and come on with me, of course). I miss Gabe, and I want to see him.
But we are here for a reason. I can't remember if I've shared this before or not, but from the time I found out I was pregnant with Jonah until the day he was born, Matt and I prayed on our knees for him every night. My recurring prayer was "Let him live, God." Over and over and over again I would pray, "Let him live so he can praise you, Father. Let him live so he can tell his story." I dreamed of him being a missionary (whatever that might mean). And all of these prayers were before we ever even knew there was anything wrong. We had been told that Gabe dying was a fluke; inexplicable; "just one of those things." There was no reason to think that Jonah would be born "unhealthy." But then he came, and it was so bad. And I was sobbing, and Matt had to walk out in that waiting room, face our families, those hopeful eyes and share bad news... again. And nothing was like it was supposed to be. I'm considering sharing some of the photos Lauren took of us that day after we knew something was wrong. I was looking through them the other day, and they are heartbreaking - the fear, sadness, desperation in our faces. Why us?
Why NOT us?
God answered my prayers. Jonah is living. Not only living, but thriving. He's beating the odds, eating, growing, resisting infection. By the statistics, he should not be here right now. But God said, "yes." Jonah has a story to tell. We have a story to tell. We're not done praising. It's not time to go yet.
And I'm glad.
I'm so thankful that (for now at least) he's said yes.
I sing this song to Jonah, but I change the word "mother."
I know dark clouds will gather ‘round me
I know my way is rough and steep
But golden fields lie out before me
Where God’s redeemed shall ever sleep
I’m going there to see my brother
He said he'd meet me when I come
I'm only going over Jordan;
I'm only going over home.
Yep, we're surely going...
But not quite yet.
Wednesday, January 20, 2010
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37 comments:
I don't know what else to say but that we hear you, are on our knees praying for you as well... and grateful for the days we've been given, no matter their shape or content. May He give us all strength for each day until it is time to go "over home."
Beautiful. I love the Wayfaring Stranger. It has special meaning to me. Thank you for reminding me.
I will say a special prayer for Jonah tonight.
Beckie in Brentwood, TN
Here's a link for all the words.
http://en.wikipedia.org/wiki/The_Wayfaring_Stranger_(song)
Thanks (again!) for sharing your heart with us, Patrice. And for sharing your precious baby with us, too! Jonah has been on my mind and in my prayers a lot today - as well as Tripp and Sam.
May God give you the strength and peace that only He can provide. We are all praying for you!
Love from TX,
Laura
Patrice - I can't begin to imagine the challenges that you all face each day, but I want to let you know that Jonah IS fulfilling the dreams you had for him. He might not be sharing God with the poor in a developing nation, but we need folks to do that here, too - and he's doing a great job. So, by the way, are you and Matt. I am amazed by the strength of your faith - even through losing Gabe, and even though Jonah has EB (and all that goes with that). Thank you.
Just thanks for that post. Thanks.
i feel that way many days too. just ready to go home. missing my sons. wishing i could take my daugthers and husband with me.
grief is a hard road. and my heart goes out to you and all you endure caring for Jonah. i admire you so much....
we'll see our boys again. we will.
...til then.
Beautiful. You have such a way with words. Thank you for baring your soul. Those of us who are carrying the crosses of our children need to be reminded sometimes of all the things you said. Thank you for being so honest. You are helping so many people. I will be on my knees tonight praying for Jonah, you and Matt.
Much love and big hugs!
Patrice, I would have never know what EB is if it weren't for you. You have educated so many of us on the trials of this disease and the need for a cure. My heart breaks for you when I imagine your days and nights caring for Jonah and then I read your blog. You have so much strength. You love Jonah with all your heart and then some more. You are so open with your feelings and I, for one, and glad you are so comfortable and know how much you, Matt and Jonah are loved. Keeping you three in our prayers. Blessings, Mari
Wow -- thank you for sharing this, Patrice!!!!
I appreciate that you share your little Jonah with us - each morning I think "I've gotta check on Jonah" to see how to be praying for him, you and Matt.
I remember the days you wondered how you would ever care for Jonah at home - and look at you now!
I think back to when the church was completing your changing area to make things just a little easier.
I look at Jonah's eyes and I see such love reflected - you are all a living miracle. Keep telling your story, the good, the bad, the ugly and then some good again.
God is faithful -
YOu are an amazing testimony of God's strength and love. I am much older than you, but I hope to shine God's love like you do.
praying for ya'll. sorry again about gabe. it is so unfair to loose a child. I have never lost a child and i can't even imagine the heartbreak ya'll must feel. prayers, hugs, and blessings~erin
Beautiful post, girl.
awww, patrice. when you really share your heart your story SINGS God's praises. jonah is a precious little boy and you and matt are such sacrificial loving parents. i hope you can feel the prayers going up for you… He will sustain you and give you the courage to press on…
Why not is a good way to look at things. You are one terrifically strong person. I have said this before, but will say it again... Jonah and Gabe are very lucky to have you for a mommy.
I completely agree with some of the others. I check every day just so I'll know how to pray for you, Matt & Jonah. Thank you for sharing your heart!!
powerful words....god bless you.
I love your post, and I want to thank you for having this blog. I think of Jonah and your family daily. I have a healthy daughter who is 8 months, and I don't know why. I don't know why some children have to struggle and others are fine. But because of your blog I do not take one second for granted. None of us are guaranteed tomorrow. Jonah has helped us live a more joyful, thankful life. "He gives and takes away...my heart will choose to say, LORD blessed be your name."
Patrice,
Hi I my name is Jenny and I am a friend of LeeAnn's (I think we met once at Bonnie and Bobby's house when you were first pregnant with Gabe) and I went to CBC over the years with Sarah. I have been following your blog for over a year now but I don't think I've commented much.
I just wanted to tell you that this post gave my chills. You are so right to know that we deserve nothing and that God is so gracious for giving us what we have! He has proven in so many wonderful ways that prayer is such a powerful thing! I pray for you, Matt and Jonah everyday when I'm reading your posts. I know God has grand plans for him as he grows up (and I truely believe God is going to give him many, many years here).
I love that you are always so honest with what you are feeling no matter if it's good or bad. And I don't care what you say to the contary, you are an incredibly STRONG woman. God gave you that wonderful sense of humor and scarcasim (that we love!)to be able to deal with the trials He has given you! I wish so much that I could take away some of your pain and that your burden would be lifted (even for just a moment). One day it will be! :) It's so wonderful to have that security we have in God!
Hope your day is great and praying for Jonah to eat, eat, eat (and not gush!)
~Jenny Cline
www.jordanandjennycline.blogspot.com
I think you might be encouraged by some of the things a pastor here in Texas has been posting on his church's website. He is a well known andbeloved pastor so forgive me if you already know the situation, I'm just struck with your comment "why not me." Matt chandler of the villiage church in highlands Texas has a huge ministry, strong and beautiful. It blessed us for several years.This November he was diagnosed with brain cancer. He is now posting amazing blos and comments about "Why not Him?" that he actualy is feeling blessed that God would find him worthy to carry such a burden. That through his bruising he can bring so much more Glory to our lord. You have blessed so many people by sharing your story on this blog. You are bringing Him so much Glory. If you feel so inclined you can read his blog posts/video posts at www.thevillagechurch.net. I hope it encourages you!
Praying for you today just like every day, but with a little extra gumption.
Oh, I got your number. :) I know we say how great you are and you feel like you can't take the compliments cause your grumbling in your soul, but we all are. :) What matters is when it's all said and done you KNOW you can trust God and you DO trust God and NO MATTER what happens you know this world is not your home. That's what matters. You are a great example of God's love, even when you grumble. :)
Patrice, your post brought tears to my eyes today. To live IS Christ. Thank you for wanting to fulfil that in your life and in Jonah's live. Thank you for reminding me to count my blessings.
Praying that you have better days ahead and that Jonah's esophagus heals quickly and that he stops gushing.
God certainly answered your prayers, just not in a way anyone could have imagined at the time. Jonah is a missionary. He is teaching people about God's love and also educating people about EB...a disease I had never heard about until finding your blog. Jonah is such a blessing to so many people. I'm sorry that you have to go through what you do, and I pray for you all the time, but I am thankful to God for Jonah and for you allowing your family to minister to me.
~Amy
what a beautiful post. Praying for your family tonight and always.
My heart stopped when I saw the title of your post, thinking something had taken a turn for the worst. The post itself was beautiful and truthful. We continue to pray for you, and especially for Jonah's continued health.
Patrice,
Wow! What a testimony, we are so thankful that Jonah is doing so well!
Thank you so much for the sweet letter that you sent us! It was such a blessing!
Hang in there Patrice, you're a fantastic mom! We are still praying for Jonah!
Keisha Goodman
What an awesome testimony! You are an inspiration to us! Keeping Jonah, you, and Matt in prayer!
I cant help, but cry reading your post. I, too, am a mother of an angel. Like Gabe, my Ava was born sleeping July 2008(40 wk still birth). I just had my "rainbow baby" back in Dec, but every day she was in my womb, I prayed for her and our family. I didnt know what I would do if another child was taken away from me. Please know that you, Jonah, and Matt have so many prayers coming your way!! Many hugs being sent your way!
Oh, Patrice, what a beautiful, painful post. I just wonder, why any child? Why does any child--from your sweet Jonah to brave Samantha to the orphaned and wounded in Haiti--have to suffer? What a world we live in. And what a great God we have, who somehow carries us through this even when he doesn't necessarily make our lives what we desperately wish them to be. Do you think God grieves for what his world has become? Do you think that he pursues us all in active, unconditional love? I think so, some way, somehow. Thanks for your continued honesty.
--Kelley in GA
that was amazing. thank you for writing, for sharing. I will be praying for your precious son.
Oh Patrice, your words are heartwrenching. I can feel the emotions in your writing. Thank you for sharing though. You are so right when you say "Why not us?" Who are we that we are exempt from any of God's plans? I've asked the same question many times for my own son (adult now). He too is "living", BUT NOT THE WAY I (me, yoohoo - me, you know, the person who used to think she knew everything) EVER THOUGHT HE WOULD LIVE. I don't really know where all this is coming from, maybe from one mother to another. Guess I just want to tell you that I feel your pain. While I've always tried to look at our situation with Josh (our son)through the eyes of Jesus, there were (and occasionally still are) those days when I just cried and had my pity party. That's just the way it is I guess. But IT HURTS, it's that simple. I pray that God continuously and abundantly pours his love out on you, Matt and Jonah.
Humbly and with love, hugs and MANY PRAYERS.
Sandy Moore
Oh Patrice, I can't imagine the depths of the emotions you have been through. Thanks for sharing so much of yourself.
I'm continually reminded of Psalm 139 when it says, "even in the darkness you are there for even the night is like day to you." God can turn all things for his glory, no matter how dark and difficult they are.
I've been reading your blog from the time Jonah was born. I've prayed for Jonah and your family everyday. He looks so sweet. I love reading about your everyday life. You are very real, and every time I read about a hard day, I pray so much harder. Prayers and blessings to you.
~Rebekah
Oh, Patrice..what a beautiful post. I don't know what else to say, but just know that there are many, many prayers going up for your family.
I know you don't have time to read blogs, so I am going to give you a quick outline of our family. I am a single mom of two girls, 13 & 14. I have no other family. My 14yo suffered a TBI 18 months ago. My 13yo lived through some medical mess that no one expected her to live through. When they ask the question, "Why?" I always answer that we are to expect trouble in this life and that times of blessing are the exception, times of trial are the rule. You have a good head on your shoulders to counter the "Why me?" with "Why not me?" Hang in there, Patrice. You have walked a hard road and are still walking a hard road, but God will not let go of you. He will hold you close and see you through. As always, I am praying for you. Blessings.
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